Let’s embark on a journey to explore the profound world of end-of-life care and how it’s changing the way we approach the final chapters of our lives.

This project outlines the essential components of end-of-life care and unveils our innovative research approach, conducted in collaboration with patients and families, as well as clinical and non-clinical staff within an NHS trust.

Close-up of a person and person holding hands

In the UK, a startling statistic tells us that approximately one in three patients find themselves in the hospital during their last year of life. Even more striking, about one in ten will pass away during that hospital stay.

While many of us envision our final moments in the comfort of home, the reality is that most people take their last breaths within the sterile walls of a hospital.

Surprisingly, this isn’t necessarily a negative outcome. Some patients actually prefer the familiarity and safety that hospitals provide.

In moments of unexpected deterioration or acute events, hospitals remain a sanctuary for many. Ensuring the best possible end-of-life experiences within these hospital settings is paramount.

Breaking down the barriers to excellence

Recent studies have shone a light on the obstacles to achieving optimal end-of-life care. These challenges include poor communication, insufficient symptom control, and the continuation of treatments that may offer little benefit.

But it’s not just the medical aspect; it’s the culture within hospitals that sometimes prevents us from offering the best care. In some settings, there’s a reluctance to even acknowledge the possibility of death, which can delay the implementation of essential comfort measures. This can result in unnecessary, burdensome interventions.

It’s high time we addressed this issue and shifted the narrative around death.

Defining excellence in end-of-life care

What exactly makes an excellent end-of-life care experience within the confines of a hospital?

While there’s no one-size-fits-all answer, studies have highlighted some key factors. These include clear and open communication, trust in healthcare professionals, compassionate care, emotional support, an appropriate environment, and the involvement of family.

It’s not just about the clinical care; environmental factors and the perspectives of non-clinical staff play a vital role in creating a comprehensive end-of-life care experience.

Strikingly, the hospital environment itself can be a source of dissatisfaction for patients. Balancing the priorities of observation and privacy adds complexity to creating an ideal environment in an acute setting.

Clearly, further research is needed to better understand what the ideal environment looks like and how it impacts patient experiences.

Putting personal wishes first

Research has shown that people fear having their personal needs and wishes ignored or overridden, especially when facing death. This concern extends to their families, caregivers, and those who have experienced bereavement.

The desire to be actively involved in one’s care is strong. It means having access to information, advice, and support to make informed decisions about health.

Despite the challenges in discussing death, individuals express a desire for repeated opportunities to have honest conversations about their future. Importantly, there’s evidence that poor end-of-life experiences can lead to complex grief reactions in bereaved families and caregivers.

Turning insights into action

Now, let’s turn our attention to an exciting research project: “Excellence of End of Life Care: Making Better Memories.” Our mission is to understand the end-of-life care experience from the perspectives of patients, families, and hospital staff in acute settings.

We’re using a participatory action research (PAR) design, following the co-operative inquiry approach. Our aim is to provide a platform for participants to openly and honestly share their perspectives without compromising their autonomy or decision-making capacity.

Giving patients a voice in the research process is essential to ensure their needs and preferences are met by healthcare providers. By actively listening to patients and families, we gain invaluable insights into their experiences, views, and challenges. This approach empowers them to communicate their wishes, desires, and concerns, enabling healthcare providers to respond with more compassionate and personalized care.

Through our research, we aim to bridge the gap between patients, families, staff perceptions, and the organizational capacity of acute healthcare providers, fostering better communication and collaboration.

Our study is essential as it seeks to create a meaningful impact on end-of-life care in acute hospital settings. By actively involving patients, families, and staff in the research process and ensuring their perspectives are valued, we’ll contribute to the development of best practices that truly make a difference.

Dr Loua Khalil is Lecturer in Leadership at Henley Business School, University of Reading. This project is in collaboration with Royal Berkshire Hospital.